othering – UAB Institute for Human Rights Blog

Guardians: The Bridge between the Medical and Social Models of Disability

Getting fitted out for a better future Omar (in the middle surrounded by his brother Rasekh, 10 and sister Majan, 8) was born with weak legs and hands since birth. They came to the Red Cross orthopedic clinic in Kabul with their father to get Omar fitted up for a wheelchair. Rasekh is in grade 4 and love Dari classes – he would like to be an engineer. Omar will have to be pushed around for the rest of his life, but his siblings are happy to support him to have a normal life – he hopes to start school soon. Aid from the UK is supporting the International Committee of the Red Cross (ICRC) to run a network of seven orthopaedic centres across Afghanistan to assist those affected by mobility disabilities, including hundreds of mine victims. The UK is to help provide 3,800 new artificial limbs and 10,000 crutches for Afghan children and adults disabled during 30 years of conflict and extreme poverty. UK Dept of Intl Development — Omar (in the middle surrounded by his brother Rasekh, 10 and sister Majan, 8) was born with weak legs and hands since birth. They came to the Red Cross orthopedic clinic in Kabul with their father to get Omar fitted up for a wheelchair. Rasekh is in grade 4 and loves Dari classes, he would like to be an engineer. Omar will have to be pushed around for the rest of his life, but his siblings are happy to support him to have a normal life, he hopes to start school soon. Aid from the UK is supporting the International Committee of the Red Cross (ICRC) to run a network of seven orthopaedic centres across Afghanistan to assist those affected by mobility disabilities, including hundreds of mine victims. The UK is to help provide 3,800 new artificial limbs and 10,000 crutches for Afghan children and adults disabled during 30 years of conflict and extreme poverty. Source: UK Department of International Development, Creative Commons

I am currently binge-watching Law & Order: SVU. In one episode, “Competence,” the rape survivor has Downs Syndrome (DS). Her mother, who is also her legal guardian, feels DS limits her ability to function “normally” in the world. The main concern of the mother is her daughter’s ability to care for the baby she is carrying as a result of the repeated rapes. The mother’s protection of her daughter extended only as far as she could be with her. Throughout the show, the revelation is that the store owner, where the daughter worked part-time as a stocker, exploited her disadvantage for his advantage. To limit the risk of the baby having DS and added to her belief in her daughter’s inability to care for the baby, the mother arranged an abortion of her daughter’s behalf. The courts stepped in and conducted a competency trial. Placed on the stand, the pregnant rape survivor acknowledged that once she did set fire to the kitchen but that she could now make soup because her boyfriend showed her. She also explained that even though she did not know how to care for a baby yet, she could learn if someone taught her.

As persons with disabilities (PWDs) move from the medical model into the social model in pursuit of independence, often overlooked are the role and needs of the caregiver. Society must begin to acknowledge and identify the paradigm shift occurring across the board. The purpose of this blog is to reflect on the role of parents and caretakers (also referred to as guardians) who attempt to bridge the gap between the medical and social models of disability while encouraging self-determination and protecting their loved ones in a created world that does not have them in mind.

The societal solution to PWDs was eugenics, institutionalization, or isolation–out of sight and out of mind for centuries. The employment of this solution allowed and continues to allow some guardians to abuse the system and take advantage of those in their care, and the pursuit of swift legal action is necessary. However, as societies move towards inclusivity, we must give encouragement and praise to those who through their actions look for avenues and solutions that empower. More specifically, we must continue to champion the guardians. With the implementation of the CRPD, standards of ADA, more universal design efforts, and competency hearings, PWDs are becoming productive members within their communities. So, what does this mean for their guardians who have sacrificed to protect their family member from the cruelty of an able-bodied world and the able-bodied world not used to making allowances for Others, particularly PWDs?

Who is a guardian? Persons with intellectual disabilities often have a legal guardian. The legal guardian acts in the “best interest” of their ward or the person in their charge. Much of the present debate regarding guardianship is the abuse of power in the denial of civil and human rights. In a 2007 study, Dorothy Squatrito Millar found that study participants did not recognize the disconnection between self-determination and guardianship or realize that there are several available alternatives to guardianship. Despite the arrival at the age of majority (18), students with intellectual disabilities did not receive the opportunity to self-advocate; rather, in many instances, they are given directions on what to do, or their guardian did the task for them. The inability to self-advocate as an adult is a denial of personhood, a violation of dignity. “We are adults. They need to accept that” and “they need to put themselves in our shoes sometimes” were some of the responses of the students.

What is notable about the SVU competency hearing is the assumption that all adults know how to care for a baby or balance a checkbook. The implication is that a person with an intellectual disability needs to have a guardian to avoid making any mistakes. As one non-disabled parent in Millar’s study put it, “We all make mistakes, and we all need help sometime—but that doesn’t mean we need guardians.” Most guardians resist the transition to adulthood and self-determination out of fear of exploitation, lack of information, and concern for their disabled child’s well-being. Millar concludes that while there is a significant need for more research on the transition to adulthood, the inclusion of children with intellectual disabilities into decision making throughout their lives does assist in the collaboration between other institutions in providing care that aligns with goals, imparts knowledge, addresses concerns, and maintains dignity and personhood.

Forgotten Countries and their Real Story: Middle East

The Middle East is a transcontinental region. When people think of the term “Middle East”, a host of thoughts come to mind such as deserts, burkas and Saudi Arabia. However, whether they are accurate is a completely different story. Most countries in the Middle East are often forgotten about, ignored, or misconstrued.

Location

One of the most interesting questions to ask people is: Where is the Middle East located? Most people don’t even know what countries consist of the Middle East. One of the reasons why is, in the United States, geography is a dying subject. In fact, about three-fourths of the eighth graders in the United States test below average in geography. Furthermore, in most schools, geography is not required in middle school or high school. Out of the fifty states, only seventeen actually require geography in middle school and only ten in high school. The Middle East consists of fourteen countries shown in the picture below. What surprised me was how I found numerous websites that differed on what countries they thought were actually in the Middle East.

Middle East Map. Source: Wikipedia, Creative Commons

Arab vs Muslim

What does it mean to be an Arab? An Arab is defined as someone who identifies as being an Arab and whose native language is Arabic. On the other hand, someone who is Muslim practices the religion of Islam. Being an Arab and being a Muslim are not synonymous. For example, you could be an Arab who is not Muslim or you could be a Muslim but not an Arab. Furthermore, about 60% of people living in the Middle East are considered Arab. There are other ethnicities such as Persians, Turks, Kurds, and Jews.

What most people don’t realize is that there are over one billion Muslims in the world, the second largest religion in the world, and the majority are not in the Middle East. In fact, the country with the largest Muslim population is Indonesia. Also, the majority of Muslims live in Asia. While the majority of the Middle East does practice Islam, there are other religions practiced such as Judaism, Christianity, Baha’i, and Zoroastrians. Furthermore, there are different sects of Islam such as Sunni and Shiite.

Another misconception is that all the countries in the Middle East are considered Arab countries. However, that is not the case. For example, Saudi Arabia is predominantly Arab. This misconception may stem from the fact that much of the Islamic faith is written in Arabic. So regardless of which country you reside in, you would have some knowledge of Arabic.

Diverse Societies

There’s a certain stereotype in regards to the Middle East called orientalism that generalizes the region as deserts with roaming camels with olive-skinned people wearing robes, turbans, and garments that completely cover women from head to toe. The fact of the matter is that the style and environment depends on the area of the Middle East. We must also consider other factors such as education, socioeconomic status, and individual preference. The veil is looked at as a form of modesty. The concept of modesty is meant to be applied to both genders and not just on women, and how each person interprets its meaning is different. Some countries such as Iran and Yemen do require veiling to go out in public; however, most people who wear a veil add their own twist to it. When considering the environment, the Middle East is geographically diverse. The Middle East seems to be defined by its deserts but there are also mountains ranges and rivers. One section of the world should not be defined as one thing. Many people see the Middle East as a backward “country” when it is, indeed, the contrary. Some of their cities rival those in the United States such as Lebanon, Iran, and Turkey. Demographic trends show that the Middle East has the “youngest population and it has the second highest urbanization rate in the world”.

“Disregarding the complexity, diversity, vibrancy, and humanity of people in the region leads to this ‘othering’ of the Middle East that is really damaging.”

One dimensional portrayal of women

A common misconception is that Middle Eastern women are oppressed and denied their basic rights because of their religion. Also, it is assumed, they must cover themselves with a veil because they are weak and passive. However, the concept of the veil actually came from Christian Byzantium, not Islam. Surprisingly, Islam gave women more rights than Western women, until the 19th century. In England, women were considered the property of their husband until 1882. However, Muslim women have always been able to keep their own assets. A more current example is when Muslim women are married they tend to keep their last name, while most Western women do not. Notably, in the Quran, Islam’s sacred book, it “states that men and women are equal in the eyes of God.” As you can see, Islam is not the determining factor behind women being oppressed. While religion can affect women’s rights, culture is the main factor driving the question of gender roles. As a result, you cannot assume all of the Middle East is the same and deem it as such. Depending on the region, women have different statuses and rights. While it is true that in Saudi Arabia women cannot drive cars, that is not true in other Middle Eastern countries. Women do have political and social rights in the Middle East, they just vary depending on the country. In fact, women have served as ministers in Iraq, Syria, and Jordan and as Vice President in Iran. That is not to say that the Middle Eastern women do not have problems, just that it is not as extreme as Western countries seem to think.

The Middle East deserves to be seen as diverse. By discussing location, religion, society, and gender people can gain a more open outlook on the Middle East. It is easy to let fear, ignorance, or the media dictate one’s perception; however, to change the cycle conversations must be created.